Open a little window on one woman's adventures with multiple sclerosis

Did I just say that?

My daughter and I were getting ready to go to a concert. We had eaten a quick supper and she asked, “how do you want to get there?” It had been a mild December, so we could walk. But it was already dark. I haven’t yet ridden my Power Chair on sidewalks at night. “We can call a cab,” I decided. A company in town was offering wheelchair accessible taxis. “I can ride my Power Chair and hop right into the back of the cab,” I explained. For some reason, I was feeling tired and uneasy about going out. Looking to my right I saw my walker and said, “I miss those Walker Days.” I caught my daughter’s gaze as she suppressed a frown. I admitted, “I can’t believe I just said that!”

What was I saying? What could I possibly be missing?

Previously, I would drive, lifting the walker to place it behind the driver’s seat. Parking at a handicapped spot close to the entrance meant I could take out my walker and slowly make my way to the theater. Usually visiting the bathroom before the show started and then taking my seat. There was a time when this was do-able. When these activities involved a little bit of duress. Just enough struggle, but not so much to tire me out. I live with struggle. These days getting up from bed can be difficult. I think I was missing the days when the struggle involved walking. When the walker supported my weight enough that I could do it for a little bit. Now walking is so hard; it isn’t walking anymore,

Hi Rita, it is tough , very tough as little bits (or larger bits) drop off. And you describe the mental energy and physical energy needed to just show up ,before you even do anything , very well. Do keep blogging and writing , I find hearing others insights so helpful.

Hi Jenny, I’ve been thinking of your comment about ‘mental and physical energy’ required just to prepare myself for going out. I hadn’t consciously acknowledged it, how much it took from my energy reserves. Having you point it out has reminded me to be kind to myself.

As always, I find your posting so thought-provoking and affective. Losses small and large. Unexpected freedoms gained. Today I am reminded by you of those unexpected, surprising thoughts that often reveal so much.
Thank you for sharing, Rita,
and warmest wishes.

Hi Rita. This is the most rotten time of the MS-journey. When I was there I used a walker inside the house and a scooter outside, going to the bathroom often but occasionally having urine accidents too. Not often but always embarrassing. The ONLY reason I didn’t give up at that stage is because I became a frequent user of the Access-A-Bus. I couldn’t go that distance and taxis I couldn’t afford. Now, since you want to go out at night but don’t want to roll at night (too cold, plain foolish. I do it now all the time, but up until a few years ago I didn’t go out at night either), I’ll tell you what kept me GOING. I ordered the access-a-bus the required time in advance and than when the time comes you have to go. Now that I use the normal buses I still book the AAB at night for regular outings, and in the mornings to get into town. I liberated myself from booked return trips in the daytime when I started to use ordinary transit. You don’t even have to go through the phase of having to wait in town for when the bus takes you home again, but I recommend that you don’t get yourself trapped into not doing things you can keep doing. You can take an attendant with you, if you want, and you have to learn the rules, but don’t stay at home. That is my advice:) Remember … Life is good, so keep living it.
Wietske

Life is good! It comes down to what I choose to put up with. I have chosen to stay at home this winter, which seems a bit silly because there really are no snowbanks. I’ve picked up a project that keeps me occupied, aside from this blogging and poetry writing and dog ‘training’. I really want to be disciplined and do physio & yoga to maintain the movement I’ve got. I’m convinced that movement is as important as my MS ‘drugs’. My bladder has been driving me nuts. I’m trying to avoid antibiotics. I’m taking better care of myself, so I can get out to do other things. I’ll get out in the warmer weather. As always, I appreciate your perspective. It’s good to share. Thanks.